scholarly journals Patient-Reported Experiences with a Relicensed Generic: Thioguanine for the Treatment of Inflammatory Bowel Diseases

2018 ◽  
Vol 27 (4) ◽  
pp. 385-389
Author(s):  
Melek Simsek ◽  
Tineke M.L. Markus-de Kwaadsteniet ◽  
Danielle Van der Horst ◽  
Chris J.J. Mulder ◽  
Nanne K.H. De Boer
Keyword(s):  
Quality Of Care ◽  
Inflammatory Bowel Diseases ◽  
Patient Reported Outcomes ◽  
Daily Life ◽  
Self Report ◽  
Patient Reported ◽  
Bowel Diseases ◽  
Inflammatory Bowel ◽  
The Impact

Background & Aim: Patient-reported outcomes and experiences are indicative of the impact and the quality of care. Thioguanine, a generic drug initially developed for leukemia, has been explored and relicensed as a certified treatment for patients with inflammatory bowel diseases (IBD). The patients‘ perception of this treatment has not been evaluated before. In this study, we aimed to assess self-reported experiences with thioguanine for IBD.Methods: Questionnaires were sent out to members of the Dutch National Crohn‘s and Colitis patient organization. The Treatment Satisfaction with Medicines Questionnaire (SATMED-Q) was used to address questions regarding the satisfaction and impact of thioguanine therapy on the disease and their daily life. Furthermore, data on demographics, disease and (historical) treatment characteristics were collected. Openended questions were used for additional comments to the questionnaire.Results: A total of 173 organization members (73% female) reported to be previous or current users of thioguanine. A total of 74% were satisfied with the effectiveness of thioguanine, whereas 5% were not. Eighty percent of the respondents were satisfied with the quality of care. A good or excellent impact on daily life was reported by 54%. A neutral or bad impact on daily life was reported by 40% and 6%, respectively. Improvement of disease activity was reported by 58%. This remained stable or worsened in 39% and 3%, respectively.Conclusion: In this self-report survey, among thioguanine treated patients with IBD who had failed with traditional therapies, 80% reported satisfaction with medical care and 74% with the effectiveness of the therapy. In the evaluation of new or rediscovered therapies, patient-reported outcomes and experiences should be considered as a key instrument.

scholarly journals P495 The interplay of biopsychosocial factors and quality of life in Inflammatory Bowel Diseases: a network analysis

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S478-S480
Author(s):  
L L Knödler ◽  
A Thomann ◽  
S Karthikeyan ◽  
K Atanasova ◽  
C Bernstein ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Diseases ◽  
Biologic Therapy ◽  
Self Report ◽  
Visceral Sensitivity ◽  
Patient Reported ◽  
Bowel Diseases ◽  
Inflammatory Bowel ◽  
Illness Identity

Abstract Background Quality of life (QoL) is one of the most relevant patient-reported outcomes in the treatment of patients with inflammatory bowel diseases (IBD), but does not only depend on disease activity. We aimed to investigate the interplay of biopsychosocial factors and their associations with QoL in patients IBD by using a network analytical approach (NA). Methods We measured QoL and anxiety, depression, illness identity, self-esteem, loneliness, childhood trauma, and visceral sensitivity with self-report questionnaires in two independent IBD-samples (sample 1: n=209, anonymous internet survey; sample 2: n=84, outpatients with active disease before the beginning of a biologic treatment). Additionally, fatigue, haemoglobin levels and response to biologic therapy (3–6 months after the first assessment) were assessed in sample 2. We estimated regularized partial correlation networks and conducted tests of accuracy and stability of the network parameters. Results In both samples, QoL had the strongest associations with visceral sensitivity and the illness identity dimension engulfment, a maladaptive integration of IBD into the ‘self’. QoL was uniquely associated with depressive symptoms and fatigue was an essential factor in this link (sample 2). Depression was the most central factor in the networks. Baseline depression scores were connected to response to biologic therapy in sample 2. Conclusion This is the first study using NA to assess the complex interplay between biopsychosocial factors and QoL in IBD. It reveals a comparable network structure in two independent samples emphasizing the importance of depression. Visceral sensitivity and engulfment connected most strongly to QoL. Beyond depression, visceral sensitivity and illness identity may be targetable characteristics to improve QoL in personalised holistic therapy in IBD.

scholarly journals Gastrointestinal Symptoms of and Psychosocial Changes in Inflammatory Bowel Disease: A Nursing-Led Cross-Sectional Study of Patients in Clinical Remission

Medicina ◽  
2020 ◽  
Vol 56 (1) ◽  
pp. 45 ◽  
Author(s):  
Rosellina Margherita Mancina ◽  
Raffaele Pagnotta ◽  
Caterina Pagliuso ◽  
Vincenzo Albi ◽  
Daniela Bruno ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Gastrointestinal Symptoms ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported ◽  
Inflammatory Bowel ◽  
The Impact

Background and Objectives: Nursing management in Inflammatory Bowel Disease (IBD) is focused on global patient care. Starting from basic knowledge of diagnostic and therapeutic management, nurses can assess the impact of IBD on patients’ quality of life not only at the physical level, but also at the psychological, social, and emotional levels. The aim of this study was to evaluate the impact of gastrointestinal symptoms on psychosocial changes in IBD patients in remission through nursing-led Patient-Reported Outcomes. Materials and Methods: We performed a cross-sectional study of 109 IBD patients in clinical and endoscopic remission. Specialist nurses invited patients to complete questionnaires on gastrointestinal symptoms and quality of life through the Patient-Reported Outcomes Measurement Information System (PROMIS). Results: We found that the gastrointestinal symptoms that the patients reported had a significant impact on the analyzed aspects of health. More specifically, belly pain, diarrhea, and bloating were associated with depressive symptoms (p < 0.001), anxiety (p < 0.001), fatigue (p < 0.001), and sleep disturbances (p < 0.001). Moreover, these symptoms also significantly affected patients’ social dimension in terms of satisfaction with participation in social roles (p < 0.001, p < 0.05, and p < 0.001 for belly pain, diarrhea, and bloating, respectively) and physical functions (p < 0.001). The results were virtually the same in a multivariable analysis adjusted by age, gender, body mass index (BMI), and disease duration. Conclusions: Even during remission, gastrointestinal symptoms are the main factors that influence quality of life in IBD patients. This exploratory study highlights the need to adopt validated questionnaires in clinical practice, and demonstrates that PROMIS is a valid, objective, and standardized instrument that can help nursing staff to better define the consequences of the disease in a patient’s daily life.

Changes in Patient-Reported Outcomes With Vedolizumab Therapy in Patients With Inflammatory Bowel Diseases (IBD)

2017 ◽  
Vol 112 ◽  
pp. S342-S343
Author(s):  
Millie D. Long ◽  
Christopher Martin ◽  
Wenli Chen ◽  
Elizabeth Jaeger ◽  
Morris Barocas ◽  
...  
Keyword(s):  
Inflammatory Bowel Diseases ◽  
Patient Reported Outcomes ◽  
Patient Reported ◽  
Bowel Diseases ◽  
Inflammatory Bowel

scholarly journals Quality of Life Impact and Special Issues in Women with Inflammatory Bowel Diseases

2021 ◽  
Author(s):  
Gabriel Constantinescu ◽  
Gina Gheorghe ◽  
Ecaterina Rinja ◽  
Oana Plotogea ◽  
Vasile Sandru ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Diseases ◽  
Standard Of Care ◽  
Cross Sectional ◽  
Men And Women ◽  
Bowel Diseases ◽  
Inflammatory Bowel ◽  
The Impact ◽  
Gender Specific

Abstract Background: The impact of inflammatory bowel diseases (IBD) on quality of life (QoL) of patients is significant and has important social and professional consequences. Methods: We aimed to describe the patients’ perspective regarding the impact of IBD on their overall QoL and to evaluate the differences between men and women. An observational cross-sectional study, that included 180 patients with IBD in clinical remission, was conducted. All the patients completed a number of 3 questionnaires in order to evaluate the general aspects of their QoL. A separate questionnaire was created regarding gender-specific issues in women with IBD encounter. Also, particular features such as the incidence of anemia and osteoporosis among IBD patients were documented. The data obtained were analyzed and compared between the two gender-classified groups. Results: According to the Short Inflammatory Bowel Disease Questionnaire (SIBDQ), patients had a general perception of a good QoL, but the impact was higher in women. Fatigue and tiredness were severely perceived almost to the same degree regardless of gender, whereas anxiety and unemployment were more present in men. No significant differences in women with IBD during active disease and during disease remission were found. Conclusions: The overall quality of life of IBD patients is affected in many aspects, leading to the deterioration of their social and professional lives, for both men and women, but some aspects remain gender-specific and require a personalized standard of care.

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